In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
From the Profound Autism Alliance:
| ||||||||||||||||||||||||||||||||||||||||||||
| ||||||||||||||||||||||||||||||||||||||||||||
| ||||||||||||||||||||||||||||||||||||||||||||
Showing posts with label profound autism. Show all posts
Showing posts with label profound autism. Show all posts
Wednesday, July 22, 2026
IACC Comment Period
Thursday, May 7, 2026
IACC Meeting Went as One Would Expect
In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
RFK Jr. has stacked it with his own type of people.
Daisy Yuhas at The Transmitter:Scientists have expressed concerns about last week’s meeting of the newest Interagency Autism Coordinating Committee (IACC), raising questions about the meeting’s content, process and impact on future U.S. federal funding for autism research.
“The day was slightly unhinged,” says David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine and former IACC member, who attended the public meeting virtually.
U.S. federal law mandates that the IACC—which coordinates the Department of Health and Human Services’ efforts on autism—convene at least twice annually to develop a strategic plan for autism research. But the latest IACC gathering on 28 April did not deliver on that goal, according to Mandell and other former committee members who listened to the meeting.
Instead, the committee pushed forward three policy proposals in a way that may have violated federal law, according to Mandell and statements by the Autism Science Foundation and the Autistic Self Advocacy Network.
The main topics in these proposals—profound autism, challenging medical comorbidities and the dangers of wandering and elopement—are worthy of discussion and policy change, Mandell says. “I can make common cause with some of the concerns and ideas that were expressed.”
But completely absent from the agenda was any development of a strategic plan “for conduct of, and support for, autism spectrum disorder research” as stipulated by the Autism CARES Act, former IACC member Alycia Halladay, chief science officer of the Autism Science Foundation, told The Transmitter.
Wednesday, April 29, 2026
IACC Endorses the Term "Profound Autism"
In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
RFK Jr. has stacked it with his own type of people.
A U.S. advisory committee appointed by Health Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term "profound autism” for those with the highest support needs, and improve gaps in medical care for people with autism.
The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.
...
The spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.
The committee also prioritized improving medical care for autistic patients who suffer from other health conditions, such as gastrointestinal, sleep, neurological, autoimmune and metabolic disorders. Such illnesses are sometimes undiagnosed by medical providers or assumed to be symptoms of autism, leaving patients without critical care, they said.
...
The public members of the committee, those appointed by Kennedy to represent the autism community, voted on Tuesday largely in support of making recommendations to him. Many of the federal members, those who represent relevant government bodies, voted to abstain, arguing that the agencies needed more time to review the proposals.
The panel's recommendations passed and will be sent to Kennedy.
.
Saturday, April 18, 2026
RFK Jr Refuses to Apologize
In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread. Examples include measles, COVID, flu, and polio. A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.
Much of the nearly three-hour hearing seized on Kennedy's previous comments about autism that Democrats believe are harmful to the community.
Lucy McBath, D-Ga., asked Kennedy to apologize for saying that "autism destroys families" at a presser last year.
"I was talking about people with profound autism," Kennedy told McBath. "People ... who have lowering impact autism. I'm talking about people who are nonverbal, non-toilet trained, head banging."
"I find that very, very sad. It should be very easy for you to apologize if that's not, in fact, what you meant," McBath said.
"Those are crocodile tears, Congresswoman," Kennedy replied.
Kennedy had a rare exchange with a Republican lawmaker over largely unfounded claims about the link between Tylenol use among pregnant mothers and the increased risk of their unborn children being diagnosed with autism and other health disorders.
Virginia Foxx, R-N. Car., asked Kennedy about a recent study suggesting there's "no connection" between Tylenol usage in pregnancy and autism in babies.
"The study is a garbage study," Kennedy told Foxx. "It should be retracted."
The study analyzed 1.5 million children in Denmark and found no link between Tylenol during pregnancy and autism later in life.
Kennedy claimed the study needed to be retracted because it determined whether women took Tylenol during pregnancy by prescription, and Tylenol is a well-known over-the-counter medication.
Wednesday, March 25, 2026
Prevalence and Severity Levels
Abstract
Purpose
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) introduced severity level specifiers for autism spectrum disorder (ASD) with minimal description of the criteria for categorizing three levels of severity (1 to 3, with 3 being the most “severe”). The objective of the analysis was to assess the prevalence of ASD severity levels using population-based surveillance data.
Methods
We analyzed severity level data on children with ASD ages 4- and 8-years-old in 2018 and 2020 in the multisite Autism and Developmental Disabilities Monitoring (ADDM) Network. Prevalence of any documented severity level and of each individual level were calculated overall and by demographic characteristics. Prevalence ratios adjusted for sex, race/ethnicity, age, intellectual disability, ADDM surveillance year, and site (aPRs) and 95% confidence intervals (CIs) were used for comparisons.
Results
Less than half (40.4%) of children with documented ASD diagnoses had any severity level specified in their records, with wide variation by site (4.8%-73.2%). Severity levels were more common in records of children aged 4, in surveillance year 2020, and more often missing in non-Hispanic Black children and from records also missing information on intellectual disability (ID). Higher prevalence of more severe (level 3) ASD was observed among non-Hispanic Black children, children aged 4 years, children in 2020, and children with ID.
Conclusion
Utilization of the DSM-5’s severity levels by community professionals varied widely, limiting their potential utility in identifying needed services and supports for children with ASD.
From the article:
Wide variation in use and assignment of severity levels across sites suggest a lack of standard of practice for determining a child’s level of severity. This may be due to differences in diagnostic training, clinical protocols, or documentation practices. The DSM-5 specifies that “the descriptive severity categories should not be used to determine eligibility for provision of services. Indeed, individuals with relatively better skills overall may experience different or even greater psychosocial challenges. Thus, service needs can only be developed at an individual level and through discussion of personal priorities and targets” (APA, 2013). Providers may therefore question the utility of severity levels defined by support needs, when the DSM also advises that service needs be determined on an individual basis. There is at least one documented instance of severity levels being used to determine eligibility for services: Australia requires at least a level 2 designation to receive their National Disability Insurance Scheme (NDIS) (National Disability Insurance Agency, 2022). It is unknown whether and how often severity levels are used by U.S. service systems.
The degree to which autistic people find utility in the severity levels is unclear. Some who had been diagnosed under the DSM-IV with Asperger’s disorder found the Asperger’s descriptor helpful in understanding themselves and in describing their needs, and they reported concern when it was removed from the DSM-5 (Kapp & Ne’eman, 2020). The severity levels introduced in the DSM-5 could provide a similar type of descriptor that some autistic people find useful. However, other autistic people have expressed concern about the use of severity levels because they might be used to limit care access or to inappropriately group people with very different types of support needs (Kapp & Ne’eman, 2020). Similar concerns have been expressed in other attempts at grouping functioning in ASD, notably with the introduction of the term “profound” ASD, coined by the Lancet Commission on the Future and Care and Clinical Research in Autism (Kapp, 2023; Kripke-Ludwig, 2023; Lord et al., 2022; Pukki et al., 2022).
Sunday, February 15, 2026
Profound Autism 2026
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
There’s now a growing push to separate profound autism — in which people need constant care for life, have a certain level of intellectual disability and are nonspeaking or minimally verbal — into its own diagnosis. The hope is that it would help ensure that people like Connor and Ronan get the support and services they need and that research includes them.
In the United States, an estimated 1 in 31 children have autism spectrum disorder. Researchers estimate around a quarter have “profound autism,” a term introduced in 2021 by a group of experts, the Lancet Commission, to describe people most disabled by the developmental condition.
But some in the autism community worry that creating a separate diagnosis would reduce attention on the broader spectrum and the individual needs of everyone on it.
Andy Shih, chief science officer for Autism Speaks, said no matter where people fall on the debate, “there’s absolutely no doubt that we need to elevate awareness about the needs of this group.”
...
Judith Ursitti, president of the Profound Autism Alliance, is among those who now want profound autism separated out. People in this category lack appropriate treatments, supports and enough providers trained to handle their level of care, she said. And the vast majority of clinical research doesn’t include them.
“If you don’t have research, you won’t have treatments. You won’t have achievable services and supports,” said Ursitti, whose adult son has profound autism. “There are people across the spectrum who have high support needs that are intermittent. The difference with our population is they’re constant.”
But Dena Gassner of Drexel University’s autism institute -- an autistic senior research scientist and mother of an autistic adult with moderate support needs -- said she struggles with the idea of assigning someone the label of profound autism. She said it could be stigmatizing.
She said there’s nothing wrong with being autistic; the problem lies in “the massive lack of supports and services” in our society. “We need to come together in a unified voice to talk about services for the entirety of the spectrum.”
Friday, December 26, 2025
Autisms
Natalie Sauerwald is one of the lead authors of the subtypes study and a computational biologist at the Flatiron Institute, part of the Simons Foundation, which funds scientific research. She compared earlier autism research to assembling a jigsaw puzzle, only to find that the pieces didn’t quite fit — not because the image was unclear but because “the box had always contained several puzzles, shuffled together.”
There isn’t just one autism, Sauerwald said: “There are many autisms.”
...
The work published in July in Nature Genetics detailed the four categories.
- Broadly affected: The smallest group — about 10 percent of participants — faced the steepest challenges, marked by developmental delays, difficulties with communication and social interaction, and repetitive behaviors that touched nearly every part of life.
- Mixed autism with developmental delay: Roughly 19 percent showed early developmental delays but few signs of anxiety, depression or disruptive behavior. Researchers call this group “mixed” because its members vary widely in how strongly they display social or repetitive behaviors.
- Moderate challenges: About a third of participants fell into this group, showing the hallmark traits of autism — social and communication differences and repetitive habits — but in subtler ways and without developmental delays.
- Social and/or behavioral: The largest group, around 37 percent, met early developmental milestones on time yet often grappled with other conditions later on, including ADHD, anxiety, depression or obsessive-compulsive disorder.
...
That breakthrough idea was given another boost in October when a second study — published in Nature by an entirely different team using separate data — arrived at essentially the same conclusion: Genetically distinct forms of autism may unfold on different life timelines. The new analysis, based on data from the United States, Europe and Australia, suggested that children diagnosed after age 6 carried distinct genetic profiles and that their form of autism looked strikingly different from the early-childhood type — less like a developmental delay and more akin to conditions such as depression, ADHD or post-traumatic stress disorder.
Wednesday, October 1, 2025
Profound Autism 2025
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
[Allison] Singer, who is the head of the Autism Science Foundation, a nonprofit that funds autism research, is one of a group of parents and clinicians who are calling for the autism spectrum diagnosis to effectively be split in two, saying it has become so broad that it is obscuring the experiences of the seriously disabled people it was first meant to describe, like her daughter.
At major autism conferences and in scientific journals, the group has proposed the creation of a separate category, called profound autism, for people with the most severe disabilities.
An estimated one in 31 8-year-olds in the United States has an autism diagnosis, according to the most recent data, up from one in 150 8-year-olds in 2000. While the most severe autism cases account for a small part of that increase, most of the surge reflects a rise in the number of higher-functioning people getting diagnosed.
Parents of children with severe autism say the wider diagnosis has come at a steep cost: Research that includes people with the most significant impairments has declined year over year, even as overall funding for autism research has grown substantially.
And a survey of 800 families, conducted this year by the National Council on Severe Autism, found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.
“Autism has become so diluted, we can’t really tell what we’re talking about anymore,” Jill Escher, the founder of the national council who has two adult children with profound autism, said.
Prevalence of children with autism
While both profound and non-profound autism among 8-year-old children increased from 2000 to 2016, the increase was greater for non-profound autism.
Pa
Monday, June 30, 2025
Research on Profound Autism
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
Judith Ursitti, president of the Profound Autism Alliance, told the Washington Examiner that ending genetic research on autism simply because of the risk that it could be used to justify selective abortion is to throw the baby out with the bathwater.
“What we have to do is focus on finding ways to prevent eugenics while we’re making progress,” said Ursitti. “It’s a tough situation, but humanity is capable of doing good things with powerful science.”
Ursitti, the mother of an autistic son with high support needs, said Kennedy’s description of people with severe disabilities “did not really respect the dignity of people with profound autism.” Still, she said, she supports the administration’s efforts to improve research on the causes of autism for the purposes of developing treatments for severe symptoms.
PAA has been instrumental in advocating the term “profound autism” and establishing more standardized research criteria. PAA’s definition of profound autism requires that an individual needs 24/7 care from an adult their entire life, has minimal or no language ability, has an IQ below 50, or a combination of all three criteria.
The CDC found in 2023 that roughly 27% of children diagnosed with autism fit the PAA’s criteria for profound autism. PAA’s research has found that individuals with profound autism are only included in 6% of the clinical research on the disorder.
“There is, in our world, a lot of suffering,” said Ursitti. “There’s death, there’s really horrific self-injury. And again, we value human beings that have profound autism. We love them. We want them to contribute to the world. But the suffering has kind of been pushed to the side a little bit.”
Ursitti highlighted that there are no pharmaceutical options on the market for autism-related aggression or depression symptoms, but understanding the etiology of autism could result in autism-specific pharmaceuticals or therapies.
Saturday, May 25, 2024
The Fight Over "Profound Autism"
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
Intolerance for the term “profound autism” is leaching into medical journals and doctors’ practices. Doctors who’ve devoted their careers to treating children who compulsively ravage their flesh and slam their skulls into the ground are now verbally castrated on social media and “canceled” from lectures so regularly that preserving their livelihood requires stifling crucial medical data. It’s become common for autism self-advocates to “shout down” researchers imparting medical data at conferences or to call the researchers out on social media for online hazing and threats by neurodiverse mobs.
Today, both experienced and newer autism researchers contemplate leaving the field because, as one University of California scientist, David Amaral, observed, “People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” despite the fact that “science is supposed to be about communication.” Top research institutions like the National Institutes of Health (NIH), tasked with conducting clinical trials to illuminate the disorder, face vitriolic accusations of being “ableist” and uncomprehending of the very people they are trying to help.
After the The Lancet’s commission recognized “profound autism” in 2021, the journal published an article by a doctor who wrote: “Generally, physicians think that disability is medical, and that if a patient’s condition interferes with their daily life, they are disabled. This traditional, medical model of disability does not address societal factors that influence disability, nor does it recognize disability as a cultural identity. Viewing disability as an issue stemming from an impaired body can encourage physicians to view disabled patients’ quality of life negatively . . . and to offer treatments aiming to fix the patient.”
This is absurd. I know of no person with profound autism who proudly identifies self-mutilating or violent impulses as core to their “cultural” identity. There is nothing bigoted about striving to ameliorate dangerous behaviors.
Sunday, March 10, 2024
Study of Parent Perspectives
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
Lay abstract:
In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.
From the study:
Participants expressed a view that their children’s experiences are meaningfully different to those of the most vocal members of the autistic community and that this makes them feel their children are unheard in discussions that affect them, including discussions about genomic autism research. This belief was often coupled with the idea that because their children do not have a voice – in the sense that their speech is absent or very limited – they, as parents, need to be that voice, even with the risk that they may not represent the children exactly as they would choose to be represented.
Participants used the language of severity and function level, while acknowledging that such language is unpopular within the autistic community. P6 said: ‘not everybody gets the good type of autism, the high-functioning autism’. While several participants were at pains to be clear that they did not wish to minimise the experience of others, most felt that their children faced significantly more challenges than those individuals whom they saw speaking for the autistic community on social media and elsewhere. Because they saw their children as different from the dominant autistic voice, as they perceived it, participants felt their experiences were rarely taken into account, and this exacerbated feelings of isolation. ‘It sometimes feels that the voices of high-functioning autistic people are angry and strident and do not take into account whatever their non-verbal peers may think or feel’ (P2). P15 related this specifically to the activism that took place around the launch of Spectrum 10 K:And, so for those people that are really severely affected I think basically those people kicking off kind of robbed a portion of the autistic community of that chance, to have that research done . . . I just think it was short-sighted and selfish. That is kind of quite strong, but that is my opinion.
Thursday, February 8, 2024
Medical Schools and Autism
In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.
When I entered medical school, I quickly learned that there are important gaps in autism medical education. A 2019 study demonstrated that medical students report low knowledge of ASD, and more than 90% of students cite inadequate preparation for caring for individuals with autism. Medical students also report a greater need for increased education and training in ASD care.
...
First, it is important for medical students to understand the heterogeneous symptom presentation of autism, including the different communication styles and sensory sensitivities that exist. For example, my sister uses an augmentative and alternative communication device (iPad) to communicate her needs; doctors can learn how to incorporate this in her care. In terms of sensitivities, medical providers can learn how to adjust the lighting and reduce noise for these patients. When conducting physical exams, medical providers can communicate clearly or with visual aids before initiating physical touch.
Second, for patients with profound autism, medical students can receive training on behavioral strategies that can be used to address behaviors that are challenging. Desensitization techniques that explain medical visits ahead of time (e.g., visual aids) will help autistic patients understand what to expect. Demonstration of aspects of the examination -- for example with the provider auscultating their own body with the stethoscope -- helps explain procedures verbally and non-verbally.
...
Third, medical students should learn about the different co-occurring conditions associated with autism. Autistic patients often require care across medical specialties such as gastroenterology, neurology, endocrinology, genetics, physical medicine and rehabilitation, developmental pediatric medicine, sleep medicine, and psychiatry along with speech, occupational, and physical therapies. This holistic approach will ensure that students not only formulate a comprehensive understanding of the patient's past medical history and current complaints, but also effectively practice whole-person care.
Finally, it is critical that medical students practice interviewing autistic children, adolescents, and adults. The Ohio State University Nisonger Center has created a curriculum for third-year medical students that prepares them to care for patients with autism through simulated interviews with autistic adults as standardized patients. Programs like this better support physician preparation and competency in the care of autistic patients.
Wednesday, November 8, 2023
A Case for Subminimum Wages
In The Politics of Autism, I discuss the employment of people on the autism spectrum
These are the facts: Rather than going to for-profit businesses, 93 percent of 14(c) certificates are held by nonprofit community rehabilitation programs. And no participants are expected to live off the wages they earn. Typically, 14(c) placement is part of a suite of federal and state benefits — including Supplemental Security Income, transportation and residential services — whose costs frequently run into the six figures per year per person.
Most important, 14(c) programs are extraordinarily popular with participants and their families. In 2020, the U.S. Commission on Civil Rights (UCCR) considered the future of the subminimum wage. In doing so, it solicited comments from the public and received nearly 10,000 — more than it had for any other issue.
Almost all the comments (98 percent) favored preserving 14(c) and cited many factors, including the supportive environment and participants’ preference for a community of similarly disabled peers — the chance to work alongside others while engaged in a variety of tasks, such as shredding documents, recycling plastic, slipping greeting cards into envelopes, or sorting and shelving items in a thrift shop. But the biggest reason, typically articulated by parents on behalf of adult children whose impairments make self-advocacy impossible, was that their kids are simply not capable of competitive, minimum-wage labor.
Saturday, April 22, 2023
ASF Lobbyist Argues for "Profound Autism" Designation
In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.
Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.
If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.
...
The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.
The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.
Subscribe to:
Posts (Atom)